Hi everyone, hope you all are well. I’ve seen my consultant today and, as I thought, my options are almost exhausted. I’ve been on Cyclophosphamide for three months - it hasn’t done anything and my tumours have all grown a bit. I’ve been having quite a few bowel issues - there seems to be an ever present threat of a blockage. I’m following a low residue diet which is not what I’m used to, but it does seem to ease the pain I experience when I eat anything containing fibre. I’ve had a couple of emergency moments - one notably al fresco overlooking the Outer Hebrides!
Letrozole has been offered to try to keep things stable for a bit and we also had a long conversation about the Rotterdam Regime. My team think it might be just too much for me now as it’s quite demanding and it requires a couple of nights in hospital across the three week cycle - obviously at the moment there’s a risk attached to that too, due to the virus. I asked the lovely Anna from Ovacome to do some research into trials for which I might be eligible - my team are looking at these now to see if any of them will suit, but I’m doubtful due to my odd history. Decisions are to be made, but I’ve plumped for doing nothing for a couple of weeks, taking nothing except Paracetamol and laxatives, drinking wine and the gin I made and eating anything I fancy (albeit low fibre).
It’s four years since my diagnosis and I’ve been extremely lucky in that I’ve been able to do all the things I wanted to. I’ve made loads of friends through having cancer and have, I think, become a better person thanks to all the love and support I’ve had.
I hope this post doesn’t come across as negative - I still have much optimism for the future and intend to get as much done as I can. I’m hoping I can get back on a horse in the next couple of weeks too!
Sending love to one and all, thanks for listening! Ali x
P.S. The picture is when I got back from my appointment - straight into pyjamas but kept the fancy necklace on. After my low fibre supper (omelette and chips) I had a glass of red wine - not as big as it looks, with the reflection of Pointless in it too! What’s not to like?! X
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Keep going Ali. We are only here once and need to live the best life possible for the longest time possible.
Your strong in spirit, so get on that horse and have some fun before your next lot of treatment or trial.
Good luck and thanks for posting.
🥂 Sylvia x
Your have inspired me, I hope I can muster your fortitude.
I met a lovely Oncologist when I was first diagnosed who recommended a liquid diet for my troublesome bowels, he allowed milk shakes, clear soup, tea, coffee, oxo as a drink, and of course wine! I did this for 3 days and wow it made such a difference, it is hard but doable and totally sorted out my digestive system. You then slowly introduce solid food over the next few weeks. Good luck with your treatment. x
Gosh, you've got smart pyjamas! Doing nothing for a few weeks sounds wise, gives you time to thoroughly research trials and look into the Rotterdam Regime, while refining the low residue diet.
Hope you get back on your horse soon; I remember the pic you posted years ago!
Hi Helen - the pyjamas are a hand-me-down from my daughter - Primark in origin! My stables have said they’ll be happy for me just to potter for an hour in the arena and to do as much or as little as I can. I’m going to give them a call on Monday! X
Dear Ali, love your determination and zest for life. There’s something out there for you so keep searching. Enjoy your break from treatment and Cheers! 🍷
Dear Ali. I’m full of admiration for your positive outlook. I sincerely hope you find your way to keep going. Your zest for life has always shone out from your posts. Sending love and strength. Jo 🌺🌼🌸🌻🌹
I hope that your tram find a suitable trial to more forward with - your enthusiasm for life even with its obvious challenges shines through in your post and I hope you’re back in the saddle soon x
Love and hugs to you! Attitude is everything and positivity is catching! Enjoy your wine and getting back on the horse! A little reprieve from decision making will do wonders. Hugs, Jill
Thanks for your update. You have a wonderful attitude. Feeling you’re getting the most out of the time you have is what’s important. I’m jealous of the wine. I haven’t had any in five months since I’ve started Olaparib! Enjoy riding!🌻🌻🌻
Hi - was interested in your comment about not drinking wine whilst on Olaparib. Is that because you cant tolerate it or because you have been told not to have it - I only ask because I also take this drug and do drink wine albeit only at weekends but that is only because I work full time. Would love to hear from you.
Hi. The official statement from AstraZeneca says occasional alcohol okay. My onc said no in the beginning I think because my liver enzymes were elevated but they no longer are. I’m starting to drink a bit now. Had half a beer the other day. Weekends is a good plan!
Beautiful necklace, beautiful spirit, beautiful lady. 🍷Here’s to you, Ali. I hope you find a good trial and continue to enjoy life and to be your fabulous self.
Thank you Sashay. I’m enjoying all things good and reflecting on my glorious experiences - one of which was visiting New Orleans - an experience I wouldn’t have missed for the world!
Best wishes from Birmingham (West Midlands, UK not Alabama!) x
Glad to see you can remain positive about what life has to offer you despite set backs.
Keep smiling and enjoy what makes you happy. Thank you for your optimism.
Cheryl. 🍷🐎😄
Hi Ali,
Your post is anything but negative. I’m full of admiration for your positive outlook on life. You are certainly an inspiration to all of us. I hope I can face similar situations with the dignity & courage you have shown.
Good idea Ali, give yourself a chance to find your equilibrium again then see what options are available . I am still trying to throw everything at mine but have decided to take a letrozole holiday for a month. It does seem to have kept things stable and even reduced my ca125 along with my regime from How to starve Cancer . But I need fewer aches and pains this month . It’s certainly an effective drug for me and the odd holiday is allowed!
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